Blessings

There are days in my life that I will never forget, graduation, our wedding day, the boys’ births, and foremost in my mind these days, May 1, 2013, the day Kevin was diagnosed with ALS/Lou Gehrig’s Disease.  Another recent day that looms large in my memory is November 9, 2012.  That was the night we flew to Thailand for an amazing two-week adventure.  

We arrived in South San Francisco early and went to a local restaurant for dinner before our flight.  I will never forget the moment sitting across the table from Kevin when he told he that he thought there was something really wrong with him.  I was scared, but I think the knowledge that something wasn’t right led us both to enjoy those precious two weeks in Thailand all the more.

I don’t think I could ever properly say how much Kevin means to me.  I love him intensely.  I love him passionately.  Kevin is my soul mate, my best friend, and my other half.  I protect him fiercely and am frustrated that I cannot protect him from this disease.

It didn’t take me long to find a way that I could do something to support Kevin, The Ride to Defeat ALS in Napa on September 28.  Not only did I sign myself up for the longest distance offered (100 miles), I was brave enough to sign Kevin up for the century ride also.  If he’s training to ride a century at the end of September, he’s not going to able to lose much strength between signing up in June and riding in September.  If I can, by sheer, will keep Kevin strong, I will do that.

I know that I am blessed in so many ways.  I have been overwhelmed by the support of our family, friends and community.  So many people in countless ways have shown their support for us.  If you visit the Team Denison page at the Ride to Defeat ALS website the support is obvious.  Sometimes from places we wouldn’t even have expected, including complete strangers.  Thanks to our families who have supported and joined the event, along with our friends who have done the same, and the local race community especially Sacramento Triathlon Club, Team Revolutions and Cycling Development.

If you’ve read this far, I’ll get to my point.  We started with a team fundraising goal of $2,000, we quickly raised that money and bumped our goal to $5,000, and then again to $7,000.  This week we again bumped our goal to $10,000.  We have a large  team and many individuals have reached their fundraising goals, but some still need help.  The ALSA asks all participants raise $150.  If you are reading this and can help those on our team who are below that number, I would be grateful.  If you are reading this and want to join Team Denison for the ride in September we welcome you.

Silly Things I Do

Ok, you've been diagnosed with ALS... what do you do now.

Rilutek, the brand name version of Riluzole.

Your doctor won't do much.  The only thing that treats ALS is Riluzole, and that hardly does anything to slow down the disease.  Pretty much the only thing the clinic can do is help alleviate symptoms once they get bad enough.  BiPAPs for forcing air into your lungs once your diaphragm starts to weaken, Nudexta for any Psudobulbar affect you might be experiencing, other things along those lines but nothing to treat or slow the disease down.  Some (most?) just do what the doctor tells them and wait for the disease to reach it's inevitable conclusion.  Doing nothing in the face of a terminal illness just didn't seem like a good plan so I started researching.

Now it might seem to be a bit silly for a layman like myself to try to come up with his own treatment for ALS when medical science has been unable to do so for so long, and maybe it is a bit.  Once I started reading, however, I realized that there is a rather large body of studies and anecdotal evidence indicating various substances and activities that help prolong the survival of people with ALS (PALS as they're know in the ALS world).  There is a good deal frustration amongst PALS regarding the state of ALS research, and rightly so.  The pace at which new treatments are researched and trialed for a relatively rare disease like ALS is frustratingly slow.  The sad truth is that even if someone discovered a new drug that was a 100% overnight cure for ALS today, it's unlikely that it would get approved by the FDA in the average 3-5 year life span of a person diagnosed with ALS.

With the medical establishment no help it's off to Dr. Google to figure out what to do next.  The best place I've found for advice and summaries of research are the forums on the ALS Therapy Development Institute (ALS TDI).  There are many well read and knowledgeable people on the forum, all seeking ways to treat their disease.  The research papers are a bit daunting at first, but you do get some ideas with how to manage the disease.  One long time member of the forum has a rather extensive protocol of OTC supplements he claims has kept his ALS from progressing for 9 years.   Here's the list of supplements he's taking:

Light beer, 32-64 ounces (source of ethyl alcohol, and rehydrating agent)
Eggs, a source of lecithin, as well as other good nutrition: two a day.
B-12 methylcobalamin sublingual: 5 mg
Acetyl-L-Carnitine 1.2 g
ALC Arginate 1.3 g
Alpha Lipoic Acid 1.2 g
N-Acetyl-Cysteine 2.4 g
Taurine 2 g
Trimethylglycine (Betaine) 750 mg
Ester-C 1 g
Gamma tocopherols + tocotreinols 470 mg
High gamma vitamin E mixed tocopherols 480 mg
CoQ-10 super ubiquinol 100 mg
B-complex “Balanced B-50” Nature Made one caplet
D 2,000 IU
Flush-free niacin (inositol hexanicotinate) 320 mg
Magnesium citrate 320 mg
Selenium 200 mcg
Milk thistle extract 80% silymarin 350 mg
Lithium orotate 10 mg as lithium
LEF optimized Ashwagandha extract 375 mg
LEF super bio-curcumin 800 mg
LEF mega green tea extract 1,450 mg
Resveratrol 320 mg
Cordyceps 520 mg
Omega-3’s: variable, typically 1 gram/day

 Wow.  He estimates he's spending $300 a month on supplements. I haven't started anything nearly that extensive yet, but I have learned some interesting things.  Strange and counter intuitive things like the fact that a low body mass index (BMI) both increases your risk of contracting ALS and decreases your survival.  Alcohol is good for ALS patients, as is having high cholesterol.  While I'm not about to become an overweight alcoholic, it does open your eyes to the fact that you really need to have an open mind about what to do.

So what am I doing?  Mostly simple things... avoid weight loss, a few supplements that may have some efficacy in treating ALS, a daily bit of alcohol.  I'm still riding my bike regularly, though I avoid going hard as it takes a lot of time to recover from hard efforts.  I try to avoid sitting too long at work and I do some exercises I hope will help stave off the progression of ALS.  I walk a lot.  As I research more, I'll probably add more supplements... who knows, I may even end up with a list like the one above (probably not).  The takeaway from all this is that you've got to do something.  That "3-5 years" statistic really seems to apply to people who just do what their doctor tells them.  It may all just be psychological, but from what I've seen is that those who are actively trying to go beyond what they're being told, the average seems to be much longer and I intend for that to be the case for me.

Ruminations

Ruminate: from the latin ruminatus, to chew the cud, or to muse upon.  To go over in the mind repeatedly and often casually or slowly.  - Merriam-Webster

I've been living with my ALS diagnosis for  nearly three months.  Not surprisingly, it's been on my mind... almost constantly... ever since. As you would suspect, living under what is essentially a death sentence refocuses you on what's important... family, friends and making the most of your time with them.  What is surprising is how much that refocusing clarifies your outlook on life and, at least for me, actually improves it.  Sure, you still have to deal with the day to day nonsense, bills, messes, yardwork, whatever, but the weight they've been putting on my mind seems trivial in comparison to how it seemed before.  

http://en.wikipedia.org/wiki/File:Belted_Kingfisher.jpg

I was riding my bike to work the other day along the Folsom South Canal, which, if you've never ridden there before, is basically a boring  access road that follows a canal. There's a fence separating the trail from the canal and as I rode along I noticed a Kingfisher sitting on a fence post.  When I got near the kingfisher it flew off, further down the fence.  As it attempted to land, I again startled it into flying even further down the fence.  We continued this dance for a half-mile or more, until the bird decided to cross the canal and get completely out of my way.  The way the bird was trying to get away from me reminded me of the way I tend to deal with my day to day problems.... keep going down the same path only to find your problem keeps catching up with you.  When you finally decide to take a whole different course, you might actually get away from them.  Of course if the bird just decided to sit there and let me pass, he would have found out I was actually harmless to him.  Either way the key was realizing that what you are doing isn't working and you need to try something else.

Anyone who knows me, knows that I really like racing bikes.  I've always been competitive, and enjoyed being one of the "fast" guys.   Up until May it was a very central part of my life, something I was a bit obsessive about.  I'm not fast anymore and, all things considered, I'm cool with that.   At some subconscious level I already knew it but I'm really starting to see that what was really important to me with cycling wasn't necessarily collecting results, instead it was, and is, the whole experience... the people, the preparation, most of all, the rides.  The way that being in a race or just an intense training ride makes the everyday problems just fall away and you get those fleeting moments of perfect clarity.  ALS sucks, in every way, but the way it has forced me to look at my own mortality and laid bare that which is really important strikes me as being something like a race.  Every one of us is ultimately mortal, and examining ones personal mortality should be anything but a morbid exercise... it should be a chance to examine what you really want from life and what's important. All anyone is guaranteed is this one fleeting precious moment in which we now exist, make the most of it.

Twirling round with this familiar parable
Spinning, weaving round each new experience
Recognize this as a holy gift and celebrate this chance to be alive and breathing

This body holding me reminds me of my own mortality.
Embrace this moment. Remember. we are eternal.
all this pain is an illusion. 

Tool - Parabola (2002)

Clinic

Thought for the day:  Things stay pretty much the same, until they don't.


I know, it sounds awfully simple, bit it's actually an old thought that's been bumping around my head for a while.  Stephanie and I were on vacation in Thailand and we were sitting down for breakfast at the resort.  We'd been there a couple days and had a couple more to go before moving on to our next destination.  Though the days were filled with different adventures, there was a certain rhythm to things... you went to breakfast at roughly the same time each day where you tended to see the same people, and picked from the same food offerings then you were off for some adventures and were back in the evening drinking Changs

while reliving the days events.  I was so far from home, yet we had so naturally slipped into a routine, it's simply the way humans operate.  Looking at all this and thinking about it I came up with the key observation: since almost everyone was staying at the resort for multiple days, you could pretty much predict who would be at breakfast in the morning and drinking beers in the evening tomorrow by who was there today.  You'd predict wrong eventually, but correctly most of the time.  Once someone checked out of the hotel, however, they'd be gone and you'd almost certainly never see them again.  Things stayed pretty much the same, until they didn't.  Life, it seemed to me, is a lot like that in many ways.  Things stay pretty much the same until they don't.  There are a lot of events like the hotel checkout that stop the old routines forever and we rarely look back.... marriages, births of children, graduations,  kids starting college.

June 24th was my first "Clinic" appointment.  The Forbes Norris ALS Clinc runs monthly and is an "integrated" clinic caring for ALS patients.  The "integrated" part means you can meet with any sort of care specialist that you might need help from:  doctors, physical therapists, speech therapists, nurses, social workers, the whole gamut.  Being a new patient, and still fairly well off, most of my appointments were to baseline where I was at as a reference for the future.  One of the items they ran me through was the revised ALS Functional Rating Scale (ALSFRS-R) which ranks how you're doing from 48 (normal) to 0.  I scored a 45, which I'll take, given over a year of symptoms.  I think being athletic may have skewed the baselines somewhat... one of the ALSFRS questions asked if I get out of breath easily now.  As someone who gets himself out of breath as a hobby, I had to ask what he meant... like more easily in the middle of an expert level mountain bike race (yes) or climbing up a flight of stairs (no).   All things are relative, but the question was really asking the latter as it's scaled against a more generalized "normal".

My last appointment of the day was with my Neurologist, Dr. Katz.  I like Dr. Katz even though he's the guy who gave me the worst news of my life.  I think a lot of people have a hard time separating the person from the diagnosis and neurologists take the hit.  It must be a fairly grim job as ALS is the most common motor neuron disease and they can basically do nothing for it.  The doctor talked to me and Stephanie a while, and the topic turned to cycling.   I mentioned that we're going to be doing the ALS Association's "Ride to defeat ALS" and he said that the he and the clinic staff all do the ride every year. He tried to talk us into doing the shorter 62 mile ride, not for any medical reason, but so he'd be able to do the ride with us.  I told him that we might be finishing up our 100 at the same time as the slower 62 mile riders are finishing, I'm not sure he believed me but we'll see. :)

It's funny, you get a diagnosis like this and you first think about all the things in life yet to do.  You want to be sure to squeeze everything you can out of every minute.  The more I've thought about it the more I realized I'm already pretty much doing that.  You just can't live every single day like it's your last... the garbage still needs emptying, the kitchen still needs to be finished, the kids still need to go to school.  It's what you do above and beyond all that stuff that makes the difference and I really like what I've been doing.  Adjustments need to be made but everything still goes on pretty much like it has been until it doesn't, and not a moment sooner.

WTF

"I think we're dealing with ALS."


My neurologist's words hit me like a roundhouse kick to the face.  Over the last few months I've seen three different neurologists for the strange, and still subtle symptoms I've been experiencing.  I've been stuck with needles, shocked, poked, and prodded.  I was sitting in an exam room in the Forbes Norris ALS Research and Treatment Center and I had just seen what happened when the doctor tested my patellar reflex.  In retrospect, my reaction should have been more like Michael's:



Amyotropic lateral sclerosis (ALS), is an incurable, and inevitably fatal, disease of the body's motor neurons.  It was first identified (diagnosed) almost 150 years ago, and it's mechanics remain a mystery to medical science.  Its cause is unknown, the mechanism in which motor neurons are killed is unknown, and its cure is unknown.  It strikes virtually at random, though is most common in people over 40.  The only treatment is a drug, Rilutek, which twenty years ago was discovered to slow the disease progression down by about 10%.  It remains the only medically recognized treatment for the disease.   The disease is progressive meaning it will spread through my body,  each part gradually growing weaker until, ultimately becoming completely paralyzed.  Hands, arms, legs, face, torso, everything, one at a time.  A progression to zero.  Mercifully (or not, depending on your point of view) your mind remains unaffected in most cases.  Eventually I won't be able to eat or breath without medical intervention.

My first sign something was wrong came over a year ago.  I started getting strange "twitches" (fasciculations are what doctors call them) in my upper body.  On googleing this, ALS came up, but it rarely is a first symptom of ALS (6% or so of cases), and lacking any other symptoms I figured the twitches were benign. In December I started slurring my speech and I went to the doctor.  With no know cause or mechanism, ALS is a clinical diagnosis, meaning you look for signs and patterns rather than diagnostic tests to determine if you have the disease.  As each test they did on me came back normal, ALS grew more and more likely.  I've never wanted to see an abnormal blood test before.

Currently my symptoms are mild, a bit of a speech impediment, a tendency to tire easily, some weakness in my right hand.  I still twitch all the time and I have a tendency to laugh, or cry too easily.  Its very early on, and the progression seems slow so far.  The disease is highly variable in it's progression, no two people go through it in the same was, and it can speed up or slow down at any time.  I don't feel sick, I don't look sick. I wonder if the doctor got it wrong, then I try to talk, or I have trouble getting something out of my pocket, or I slip on the stairs.  I worry that all this is going to affect those around me, that it's going to be harder on them than it is on me.  Stephanie and the boys the ones who will have to pick up the slack when I can't, and take care of me as I loose the ability to take care of myself.  Luckily we've got great family and friends, who are supporting us in whatever way they can and that means a lot.  Having good people in your life makes everything easier.

My current intention is to write about my experiences here, so subscribe to the feed if you'd like to.  I don't know how consistent I'll be,  I'm playing this whole thing by ear.